No commercial agreement yet. NICE to discuss Spinraza at another meeting

30 April 2019

We have been informed by the National Institute of Health and Care Excellence that the NHS England and the manufacturer have not yet been able to reach an agreement through which Spinraza would become available to patients. As a consequence, NICE is unable to issue a recommendation on the treatment at this moment.

The agency has decided to call another meeting in order to evaluate the deal, should it happen in the next few days, or the conseqences of no deal.

The meeting will take place on 8 May 2019 and will not be open to public.

TreatSMA is deeply concerned by the unexpected delay. Children and adults with spinal muscular atrophy keep irreversibly losing muscle function every single day. There are no words to describe the urgency of making Spinraza available on the NHS. We call on all parties to show maximum goodwill to help save lives.

We are a UK community of people with spinal muscular atrophy (SMA) as well as parents of children with SMA who have joined hands to fight for wide and equitable access to treatment. We work entirely on a voluntary and non-profit basis, being driven by our committment to saving the lives of ourselves and of our dear ones.